Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Refractory Sprue
0

10 posts in this topic

I've been reading up on Refractory Sprue (mainly because my diarrhea hasn't improved), and found so much info on Refractory. But some of it contradicts and I was wondering where you get the facts from? Any good websites known?

 

Is it really as much as 10% of celiacs have Refractory Sprue? And is it true that after 10 years gluten-free your chances of developing RS go down?

 

Ok, I am just generally interested too, purely because I don't know what info to trust, I know it's every Celiacs worst nightmare. Including me! But just want the facts!

 

What are the symptoms?? I know diarrhea is one. 

 

Any pointers for good articles? Knowledge is power!

 

Many thanks

0

Share this post


Link to post
Share on other sites


10% sounds very high...haven't researched it in over a year, but seem to remember the number being less than 5%.

 

If it makes you feel any better...we were convinced I had Refractory as my annual biopsies were worse at 1 and 2 years, but thankfully at year three my biopsies were slightly improved -- still Marsh 3 but at least they were As and Bs.  I'm do for another, but my current insurance and work will postpone my next endo for some time.  I passed the four year mark in March -- and am finally healthy except for some pesky allergic type reactions.  For some of us it simply takes time to heal.

0

Share this post


Link to post
Share on other sites

From what I've been reading, like Gottaski says its less than 5%. One study said its more like 1.5% as it was found that gluten was still creeping into people's diets hence they wasnt healing. So it is very rare. The cause still unknown but thought to be long term malabsorption.

http://www.coeliac.org.uk/coeliac-disease/what-is-coeliac-disease/refractory-coeliac-disease

I guess we just have to be patient and check for cc and other food intolerances etc and keep up with the probiotics and digestive enzymes. We'll get there :)

0

Share this post


Link to post
Share on other sites

Just my personal opinion...I believe the definition of "Refractory" will change in the coming years...as with all Functional Digestive Disorders -- there has not been enough research -- this is changing -- too slowly (again IMNTBHO).  I'd imagine the next five and ten years will provide some very interesting "discoveries" by mainstream medical research ;)

0

Share this post


Link to post
Share on other sites

Have a look at this study: http://www.biomedcentral.com/1471-230X/13/40/abstract

Some cases of ongoing symptoms and refractory sprue clear up with a gluten contamination elimination diet.

Some of us react to lower levels than others.

I hope you feel better soon.

Thank you, interesting reading.

I only eat whole foods too, no processed! Never eat out, my house is virtually gluten free except from husbands beer!

I spoke to a nutritionist today who seemed to think that my diet of just fruit and veg probably contributed to my loose bowels. Also increased she said because I drink green juice every day virtually, and a lot of smoothies. Here's hoping she's right. I guess I'm eating lots of slop?!

Thanks again.

Ps. Read on an old thread where u mentioned Olympic athletes that had celiac, just wondered who?! I'm trying to get back into exercise, did my first 5k run today... Can't believe I did it?! I actually ran 5km! First run in 3 years! (Used to be quite fit a while ago. Want to be super fit now! Long way to go though. To know of celiac athletes would be inspirational, I couldn't find anything via google!

0

Share this post


Link to post
Share on other sites

Just my personal opinion...I believe the definition of "Refractory" will change in the coming years...as with all Functional Digestive Disorders -- there has not been enough research -- this is changing -- too slowly (again IMNTBHO). I'd imagine the next five and ten years will provide some very interesting "discoveries" by mainstream medical research ;)

Thanks Lisa

I think you are completely right. I was reading today about how underdiagnosed Celiac is, I hope they do research it better... To me it seems rather high that 5% of people get refractory, and in many cases can't do anything about it... As in with RCD 2, most people die 3-5 yrs post diagnosis? Wish I was rich. I'd sort this crap out!! I know I used to think refractory was for those who were diagnosed late in life, I guess I was mistaken hey! (Apparently the mean age is 46? )

One think I am learning is that I have to stop reading about it. I think it's detrimental to me at the moment!! It's hard not to research though in the absence of decent medical care, I feel the need to look after myself!

But I have you guys, you always set me straight. Seriously, I wish I could thank you properly, you ladies (and guys) rock!

0

Share this post


Link to post
Share on other sites

http://www.celiaccentral.org/celiac-disease-athletes-for-awareness/olympic-runner-shares-her-celiac-disease-story-9473/pg--1/

 

Thank you, interesting reading.
I only eat whole foods too, no processed! Never eat out, my house is virtually gluten free except from husbands beer!
I spoke to a nutritionist today who seemed to think that my diet of just fruit and veg probably contributed to my loose bowels. Also increased she said because I drink green juice every day virtually, and a lot of smoothies. Here's hoping she's right. I guess I'm eating lots of slop?!
Thanks again.
Ps. Read on an old thread where u mentioned Olympic athletes that had celiac, just wondered who?! I'm trying to get back into exercise, did my first 5k run today... Can't believe I did it?! I actually ran 5km! First run in 3 years! (Used to be quite fit a while ago. Want to be super fit now! Long way to go though. To know of celiac athletes would be inspirational, I couldn't find anything via google!

0

Share this post


Link to post
Share on other sites

That sounds difficult.  In that study, some didn't get better with that diet.  I think that some have to be even more careful.  I seem to have problems even with certain produce.  I need to vet everything with challenge/elimination diets.  I've started growing whatever I can because that way I can know that it hasn't gotten cc'ed somehow.

 

I eat rice from Thailand which I wash with soap, rinsed very well.  Unwashed, it gave me a reaction.  I takes me an hour to wash 4 cups, but it is worth it to not be sick.  Plus, my son is just as sensitive as I am, and he needs to be able to attend school.

 

I hope that you are on the right track and that you get better soon.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      102,677
    • Total Posts
      914,394
  • Topics

  • Posts

    • How the gluten-free diet can cause new heartburn / GERD: sodium acid pyrophosphate
      I never really had much heartburn before my diagnosis of Celiac and consequent dietary changes. But since then, I have discovered Udis, Van's, Canyon Bakehouse, and many other gluten-free brands. About a year ago I began eating 2 waffles every day, 7 days a week with my breakfast. The waffles I was eating were Nature's Path and Van's, both which use very high amounts of sodium acid pyrophosphate. The waffles are mostly air and carbs. Within a few weeks I began to develop recurrent, very painful heartburn that would popup constantly. My tolerance for acidic foods declined--whereas previously it would take much more acidic foods to cause heartburn, now any amount, no matter how small, would cause heartburn. And it kept getting worse with each month to the point that I began to worry about my health. I developed GERD that wouldn't go away for 24 hours after eating an offending food. The offending foods list kept growing bigger and bigger to the point that almost anything would cause heartburn and some degree of GERD. So I eliminated almost all foods containing sodium acid pyrophosphate and the heartburn and GERD stopped. I can eat tomato-based foods again with either no discomfort or 5% of the discomfort I used to experience, and I can eat foods on the offending food list again with no heartburn at all. Despite searching the internet for hours for an answer to what was causing my heartburn and GERD, I found nothing definitive and had to figure it out on my own. Did you know there is absolutely nothing at all anywhere on the internet connecting sodium acid pyrophosphate with hearburn? To my knowledge this will be the first ever post on the topic on the entire internet. Either that, or both Google and DuckDuckGo are suppressing the information. Also, did you know that sodium acid pyrophosphate is an ingredient found in almost all aluminum-free baking powder? That's what I get for trying to eliminate aluminum! I am making the switch to single-action aluminum-free baking powder soon--single-action doesn't have this ingredient, but it's less convenient to use unfortunately. I'm interested to hear if it causes anyone else heartburn as well. I'm glad to be heartburn-free and comfortable for the first time in a year.
    • Do this, scientists! (experiment to confirm/deny the existence of "leaky gut")
      Leaky gut is a condition that we have little knowledge of.  The symptoms this condition could cause are not agreed upon. Some health practitioners say it could cause "wide range of long term conditions [1], like chronic fatigue syndrome and Multiple Sclerosis. The possible cause list NHS gives is much more accurate: inflammatory bowel diseases – such as Crohn's disease infections of the intestines – such as salmonella, norovirus andgiardiasis  coeliac disease  chemotherapy medicines chronic kidney disease   radiotherapy to the abdomen (tummy) immunosuppressants (medicines that weaken the immune system) HIV/AIDS  cystic fibrosis   type 1 diabetes sepsis complicated surgery As you can see, the list includes a lot gastrointestinal conditions. Gut becomes "leaky", letting too big particles into blood system, and possibly these particles act as poison (because they are not  supposed to be in the blood, thus the possible bad effects). Now, to confirm this disease, I was amazed that this test hadn't been done before:
      Feed the supposed "leaky gut" patients (e.g. celiacs with damaged bowel) with IV fluids. Because these fluids go directly into the blood stream, and the particles are "elemental" (glucose, vitamins, amino acids... all supposed to be in the blood stream anyway), they shouldn't cause any symptoms. If they notice improvement, the problem is in the digestive system (I'm also including stomach). If not, such condition as "leaky gut" doesn't exist. Rather the problem is how the body reacts to the "elemental" particles. E.g the most common explanation would be diabetes (the IV fluids just caused elevated glucose levels), that also should be tested. Also the "candida theory", because its proponents say the candida is in the WHOLE body, including the blood stream. To eliminate this, patients should take anticandida meds, then again go on IV fluids, and if they NOW get better, it was candida. If not candida, and not diabetes, nor allergies, we have a new condition we aren't even aware of (body reacting to elementary particles with no obvious reason). However, if the patients DO get better, the problem IS in the gut. Now, it could be celiac disease, and the improvement could have been due to eliminating gluten from the diet (because IV doesn't contain gluten). The question remains that did the bowel actually leak any particles? (not just gluten causing autoimmune reactions and malnutrition, and explaining all the  300 symptoms).  Or the patients just get better due to NOW acquiring all the necessary nutrients.  To eliminate these possibilities, they should feed the patients with gluten-free food (or even better, with elemental diet, because it could also be lack of digestive enzymes or something else). If they get worse, the problem is STILL in the gut, and thus the "leaky gut" exists. If not, "leaky gut" is probably a non-existent condition.
    • So Hershey's Miniatures Aren't Gluten Free?
      I am really ill just now - 20 minutes after eating 2 Hersheys Milk Chocolate Miniatures - checked on the Hersheys site and the milk choc. minis are NOT included on their list of gluten-free products -and no, I am not sensitive to dairy, so that's not it.  NO MORE for me... it is not the "end to a perfect day" but it isn't fun.
    • Candida test
      I noticed after I posted this that there are some topics about this posted before.  There is a search function above.  But, if anyone has anything new to post that would be appreciated.
    • Negative tests, possible celiac?
      I had a celiac blood test around may 2015. I'm 20, male. AGA  -        35       range 0-20 TTG IgA -     5      range 0-20 I believe total IgA was normal. I have been gluten free, avoiding gluten best I could for about  2 weeks before this. On june 2015, did a biopsy, results said no signs of villous atrophy, doctor convinced I don't have it. Been gluten free for about a month before this, doctor only said to eat a 'normal' diet beforehand. I know that this could yield false negative results, but I don't think the amount of time is enough to hide the damage?   Had symptoms since I was 4-5 years old, very skinny , pale, constipation, diarrhea, inconsistent nausea (from eating wheat products, soy sauce), migraines, stomachaches, night terrors, sleepwalking. Symptoms were most evident till around 10 years of age. During my teens, the symptoms seemingly start to fade, rarely nauseated, random bouts of diarrhea 1-2 times a month or so.   Been gluten free for up to 8 months now, decided to start eating gluten again just to see how I would feel/ for retesting. Almost on day 2, no noticeable symptoms.  Ate gluten heavy for a month, a year before, breads, pasta 2-3 times a day, lost over 3-4 kg, started feeling overly lethargic during the day/after eating gluten. Sharp stomach pains and mild diarrhea once or twice.   I'm quite certain it's celiac, but if its not, and after reading about how non celiac gluten sensitivity might not exist,i don't really know what to think anymore. Any opinions/ similar experiences would be appreciated.  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      59,704
    • Most Online
      1,763

    Newest Member
    kathie m
    Joined